Wednesday, September 30, 2009

Busy week!

It's been crazy around here. We are keeping our nephews this week while the rest of my family is on vacation in Hawaii. I'm getting up at 6:00 am to get ready and then wake the boys and Baylee up at 6:45 to get dressed and eat breakfast. We leave at 7:15 to have them to school at 7:45. I've been proud of myself that we have been early each day and I've managed to make the beds every morning as well as keep up with the laundry, keep the house clean and make dinner every night!

I have overcome my nasty sinus infection! THANK GOD for steroids, antibiotics and Tylenol Severe Allergy! I literally thought my head was going to fall off a few days ago.

Baylee obviously is not having her tonsils/adenoids taken out tomorrow. My friend Robyn reminded me about that today! :) They are wanting her to have it done at a Children's Hospital. So, I'm pushing to get her consult appt moved up from Oct. 19th in Little Rock. The sooner the better. Plus, Boston is wanting this done several weeks before she has her heart cath in November!

I feel sometimes like I flip back and forth from one child to the other. Now that we have Blair all well we have to switch back to Baylee.

I wish sometimes it wouldn't be that way! I wish I could just look forward to our yearly appointments and that's it. But, then again... my kids probably wouldn't do so good go to the Dr.

Speaking of Blair... here is a pic of her belly I took last Friday. It's the area that they will eventually do a little skin graft on. Probably in the next month or so.

Also, here are a few pics from that same trip. This one was taken when we were sitting in the waiting room.

This was taken while we were waiting on Dr. Kane to come in and check her belly. I LOVE the colors in their new clinic! SO FUN!

Then, on the way back from meeting the little sweet O family in Barnes Jewish we found this cool hallway with cool chairs. We stopped for a few seconds and caught this great photo!

@Lacey - Yes we keep it wrapped with LOTS of bacitracin covering it. It's really moist. She doesn't ever mind when I change her wrap so I don't think it's sore or anything. They have no idea what is causing Baylee's PH. I wish it was an easy fix. I don't want her having it! It really bothers me that she takes so much medicine!

@Katy - THANK YOU! I've been having so much fun with it.

@Barbara - No... it's actually been kind of fun this week. Even though I'm tired!

Background

Praying for Ryan

Praying for Karsie

My Peepers!

Omphalocele and PPH/RVH

This page is for Baylee and Blair. Blair was born with a Giant Omphalocele on April 7th, 2008. She spent 7 weeks in the NICU at AR Children's. Amazed by the Dr's she came home at the end of May only on a little bit of O2 and no other medications. She was also diagnosed with a 3mm VSD of her heart. That has since CLOSED COMPLETELY and will not require surgery. Recently we found out that she was born with her heart on the right side of her chest. She had surgery on Aug. 20th without expanders. The Dr's were able to do a closure surgery with a bit of alloderm pulling the muscles together. We will be in St. Louis for a few weeks while she recovers.

Baylee is an energetic 4 year old. She loves swimming, her babydolls, playing outside and most of all her little Sissy! She is our little princess and we have been amazed at how well she has reacted to her little Sissy. She is WONDERFUL to her little sissy and loves her so much!

She was diagnosed on April 13th with a Right Ventricular Hypertrophy due to Primary Pulmonary Hypertension. In July we traveled to Boston to see a Hypertension Specialist. I LOVE this Dr! She is wonderful and answered all of my questions. She will have another Heart Cath on Dec. 1st to check the pressures in her heart again. She is now sleeping with a bit of oxygen just as a precautionary.

I hope that everyone enjoy's reading about our lives and if you learn something in the process that's even better!